Staying Connected While Letting Go: The Paradox of Alzheimer's Caregiving

By Sandy Braff and Mary Rose Olenik

When you’re living with a loved one who is suffering from Alzheimer’s disease you must be able to survive one emotional upheaval after another. What is most important during this difficult time is that you not only survive the physical demands placed on you as the primary caregiver, but that you learn to cope effectively with the emotional turmoil and preserve the quality of your own life in the process. Caregivers have been known to put their own lives on hold and become entirely devoted to caregiving—making this difficult role even harder, and often compromising their own health. This needn’t happen.

The caregivers you will meet in this book, with whom you have much in common, have learned how to deal with the frustration, anger, and grief that come naturally to any person in this role. Through their poignant stories and personal experiences you will find the strength that you need to care for your loved one while remaining emotionally committed as the mutuality of your partnership fades. Loving and nurturing while letting go is the paradox of Alzheimer’s caregiving.

You can learn from the caregivers in this book what you need to do to create a satisfying life that meshes with your role as caregiver. You will ultimately be able to make the right decisions and minimize the chaos that can overwhelm you. Within are the tools you need to manage the stressors of your changing and challenging world.

• Language: English
• Publisher: M. Evans & Company
• Release date: Feb 7, 2005
• ISBN: 9781590772850

Book preview

INTRODUCTION

When we first met to talk about our experiences with caregivers and the possibility of writing a book together, we started sharing some of the marvelous stories that our caregivers had told us. We were deeply moved by the ordeals encountered by family caregivers and impressed by their ability to move beyond them. What evolved in our subsequent meetings was the recurring theme that, for caregivers, dealing with the practical and physical care of their patient was often more clearly understood and realizable than dealing with the profound emotional effects experienced by them in their cargiving role. We had consistently observed caregivers who were not taking care of their own emotional needs. The deleterious result was evidenced in their health, effectiveness, and starnina—a circumstance that often undermined their ability to adequately care for their patients.

We also realized that we had both been privy to a unique treasure chest of intimate, unequivocally honest and insightful stories told from the caregivers’ perspectives about their journies through the vicissitudes of Alzheimer’s disease caregiving. We concluded that these narrations should be the vehicle used in our book for discussing the emotional effects of caregiving throughout the progression of Alzheimer’s disease, which robs the patient of the attributes and qualities that normally allow us to join and connect with each other in meaningful ways.

In these richly woven tales we have endeavored to set a unique and compassionate tone for caregivers, families, friends, physicians, and mental health professionals to facilitate their understanding of the day-to-day journey of navigating through the experience of Alzheimer’s caregiving. The book opens a larger world for the perspectives of medical and mental health professionals as it vividly describes the 167+ hours in a caregiver’s week, impossible to envision during a time-limited weekly or monthly office visit.

The stories, as told by actual caregivers, are narratives of grace, evolution, and transformation. Our caregivers’ stories allow the reader into a sacred place that most people are not privy to: the deepest parts of their being in which their innermost thoughts are expressed. The depth of their emotions surfaces as they recount moments of crisis, of the absurd, of hopelessness and despair that are often counterbalanced by feelings of empowerment and triumph in coming to terms with this disease as well as with their role as caregiver. In Staying Connected While Letting Go: The Paradox of Alzheimer’s Caregiving, we attempt to break down old assumptions, patterns, and expectations and offer alternative and imaginative ways of coping successfully. Our goal is to compassionately assist and encourage caregivers to change those thoughts and behaviors that inevitably sabotage not only the quality of care they give to their loved one, but also the way in which they attend to themselves. The book lends promise to the most discouraged caregiver as we ease the reader into a personal discovery of untapped potential that is rooted in his or her heretofore hidden strengths, coping skills, and ability to change. By using a cognitive therapy approach to facilitate this change, we teach our readers to alter their confusing and often defeatist concepts by coming to terms with and accepting without judgment their normal and often overwhelming negative emotions. The preeminent belief in this book is that it is necessary for caregivers to take care of their emotional selves, so that they have the internal strength to attend to their enormous task.

Sandy’s stories were derived from her fifteen years of facilitating a weekly Alzheimer’s caregiver support group for the San Diego Alzheimer’s Association. We have chosen to use the stories from a core group of members of this particular group. Some of them have remained active in attendance for years and well beyond the death of their spouse. In the book you will also discover the importance of good support groups as you read their stories of camaraderie, compassion, and humor in that special setting.

As part of an Alzheimer’s Caregiver Research Study at the University of California, San Diego, Mary Rose arranged for two-hour psychosocial interviews every six months with spousal caregivers who were the participants in the study. Over the six years of research, Mary Rose performed interviews with over 300 caregivers. Their stories were shared in those meetings that took place in the intimacy of their home, where Mary Rose could also observe the caregiver’s environment and often the status of their Alzheimer’s patient. Many of the vignettes you will read represent composites (to protect confidentiality) of stories that caregivers told Mary Rose during her interviews with them in the course of the UCSD Alzheimer’s Caregiver Study; which was sponsored by the National Institutes of Health (NIH). I am grateful to Igor Grant, M.D., Study Principal Investigator, and to Thomas L. Patterson, Ph.D., Co-Investigator, for providing me with this opportunity to have access to caregivers and to hear their stories. I am especially thankful to the participants themselves, those caregivers who so generously opened their homes and heart to me and to the study.

A few of the caregivers in the book were in both Sandy’s support group and Mary Rose’s caregiver study. We have used artistic license and changed the names, places, and identifying features of all of the caregivers in order to preserve their rights to privacy and confidentiality.

In this book we honor caregivers everywhere. We hope that our deepest regard, admiration, and respect for all caregivers is manifested throughout its writing.

PART ONE

THE BEGINNING STAGE

CHAPTER 1

Ftrst Encounters

Paul

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Feeling the weight of the day’s events in every bone of his tall, slender body, Paul sank into his comfortable Stratolounger and switched on the table lamp. As he reached for the remote control so he could catch the late evening news, his eyes fixed on the photograph standing beside it. He picked it up instead and began to recall that wonderful day, only four years ago. He and Jane were in Maui, a vacation that the kids had given them to celebrate their fortieth wedding anniversary. Jane looked vibrant in her blue, flowered pareo and orchid lei. Paul, wearing his matching shirt, was standing next to her with his arm around her. Every day they had been snorkeling, and every night they danced into the wee hours. The last evening of the vacation, they stood on the veranda overlooking the ocean and repeated their wedding vows. Paul sighed deeply.

How things had changed! This morning, Jane had once again asked him where the bathroom was. He recalled how floored he had been the first time she seemed to be lost in their home of thirty-two years and thought at first that she had been joking. At lunch she accused Paul of having secret telephone conversations with her mother, who had been dead for years. That was a new one. He thought about how Jane, who used to love to cook, now frequently asked to go out to dinner. Pondering that recent turnaround, he recognized that Jane could not coordinate preparing even a simple dinner without his help.

Jane was asleep as Paul sat alone in the den, holding the photo close to his chest, painfully cognizant that their emotional bond—the essence of their partnership—was quickly slipping away.

Reluctantly, Paul admitted to himself that it was time to capitulate to the signs of an illness he had read about and feared to the depths of his soul. He knew he could no longer continue to ignore the probability that his beloved Jane had Alzheimer’s disease. Placing the photograph back in its place on the table next to him, Paul rubbed his eyes, took a deep breath, and resolved that tomorrow would be a new day when a new journey would begin.

These first encounters, which present themselves in various subtle and unusual behaviors, over time, initiate you into what is to become your role as a caregiver. Like Paul, a somewhat hazy and bewildering series of events may have you, your family, and friends shaking your heads and wondering, what is going on here? Not only are you thrown off balance, but you may also be frightened or even filled with disbelief and mixed emotions. Confronting these emotions causes perturbations that can disrupt your equilibrium and profoundly alter all significant relationships.

In our experience in working with the caregiving population, we have observed that each caregiver has a unique story to share about his or her encounter with Alzheimer’s disease. These are stories of hope and courage in which caregivers like you, both heroes and heroines, demonstrate strength, endurance, and self-empowerment in order to clip the wings of and enfeeble the predatory emotional effects of Alzheimer’s disease on your spouse, your family, and you. Those who succeed (and most of you do) learn how to confront the illness and to accept, rather than resist, the conflictual feelings that naturally arise, in order to restore your sense of competence and well-being. As time collaborates with you as a welcome friend and healer in this unpredictable and spasmodic venture, so does the fundamental support of friends and family.

CHAPTER 2

If Only I Could Be Wrong: Tentative Diagnosis

Angela

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Since the support group’s inception over nineteen years ago, Angela has been a regular participant. She freely shared her wisdom, gained through the experience of being a long-term caregiver. At one group meeting, where there were several new attendees, she recalled her first encounter with Alzheimer’s disease.

It has been about twenty years since Joe’s first symptoms began. Looking back on our marriage, I would say that the first stages of this disease caused constant turmoil in our relationship. Yes, they really did. Those early years were sheer hell. We were always arguing. Then we would sit down together, discuss what had occurred, and I would feel we had worked this one out. The next day, guess what—we were at it again. Joe was also continually criticizing me, blaming me for things that went wrong, real or imagined. Joe, who had always been easy to get along with, was acting irrationally. His judgment and reasoning were flawed. He was hypersensitive to criticism and even seemed somewhat paranoid. I could not figure out what had happened to him or to our marriage. In addition, much to my amazement, I later learned that he was complaining about my behavior to our daughters, who believed his interpretation of events.

During this time, I was experiencing stomach pains and other symptoms that, after many tests and consultations with various physicians and specialists, initially revealed no conclusive diagnosis. I thought I 5was going crazy. Only several years later did I see a doctor who believed that these symptoms were caused by what he referred to as a masked depression. He prescribed an antidepressant for me at that time, which worked very well in reducing the symptoms.

In any case, out of sheer desperation and because my daughters were so insistent that their father was not functioning normally, I managed to persuade Joe to go to the doctor. Not an easy task. Once at the doctor’s office, he had a thorough exam and the doctor told me he suspected that Joe was experiencing symptoms found in the early stages of Alzheimer’s disease. As upsetting as this was for me to hear, I also experienced a sense of relief. At least now I had an idea about what was going on. At the same time, I thought, This can’t be so! This cannot be happening to Joe, to us, to our family.

Winston

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Winston had found May’s early symptoms unnerving. The more bewildered and confused May became, the more frustrated and impatient Winston became, resulting in an uncontrollable, impulsive, and regrettable act. He related with great pain in his voice:

My life with May had been so enjoyable before she became a victim of Alzheimer’s disease. She was bright, energetic, articulate, and dignified. With me she was agreeable and calm, and always so understanding—in contrast to my impatience and quick temper. Over time she became increasingly moody, argumentative, and contrary. I found it infuriating. Her behavior had become a daily burden that perplexed and baffled me. My frustration and intolerance increased as she grew more cantankerous. We went to our family physician, who, after examining May, said he could find nothing wrong with her and suggested that she was just bored. I must admit, I was hoping for a more concrete answer. When I tried to involve May in more activities, she became worse, and noticeably inept. One day I lost it. I impulsively shoved May against the wall and yelled at her, telling her to shape up. Thank God, she was not injured, but I was horrified by what I had done. It was then that I knew I needed some answers, some help. I called my daughter in Chicago, who suggested that I take May to a neurologist. After performing many tests on her over the next few days, he finally diagnosed May as having probable Alzheimer’s. Finally, it all made sense. I began to see May as the victim of a terrible disease over which she had no control and I felt I had very little. I realized that I had to change the way I responded to May and I have. Slowly and painfully, I have had to come to terms with the reality that May is no longer the same person I fell in love with so many years ago, but we’re still a team and we’re going to stay that way.

In these stories we describe the subtle beginnings of what is fmaliy diagnosed as possible or probable Alzheimer’s disease. Since the symptoms in the early stages of Alzheimer’s disease are inconsistent and fairly unremarkable, it is common that it may be a few years from the time of their onset before a diagnosis is even sought. An occasional forgetful moment, a forgotten name, a misplaced article, even irrational irritable moments and nominal personality changes in the patient do not at first signify that something has gone awry.

The first encounters with Alzheimer’s disease have far-reaching implications. Not only is a couple’s relationship dramatically altered, but also, since our lives never exist in isolation, the effects can and often do impact many other relationships. Your personal world that includes children, other family members, friends, and commlmity is also influenced by this formidable event. We compare the effects of these first encounters to the analogy of the butterfly effect—that is, the notion originating out of James Gleick’s book, Chaos Theory, that a butterfly stirring the air today in Peking can ultimately transform storm systems the next month or the next year in New York. The subtle changes that are experienced at the beginning of Alzheimer’s disease are pervasive, immutably transforming your world—beginning with your self-confidence and self-image and radiating virulently into marriage, relationships to family and friends, and society.

As we age, memory lapses are common and not necessarily a sign of possible Alzheimer’s disease. We can all relate to the following statements:

I simply cannot remember the author of the book I just finished reading!

What did I come into this room for?

Oh no, I did it again. Where did I park the car?

BEGINNING STAGE BEHAVIORS

Most adults experience moments when they; too, draw a blank. In fact, these situations are universal. When, however, does forgetfulness become a clinically significant problem? What is the difference between simple forgetfulness, which becomes apparent as we age, and the memory loss evidenced in Alzheimer’s disease? A more telling sign has to do with how new information is stored. Although we do slow down as we age, most elderly people can still store new information and also retrieve it later. However, a person who has Alzheimer’s disease Cannot learn new information or new tasks and does not have the ability to recall previously learned information. The cognitive characteristics of the beginning stage of Alzheimer’s, which is usually diagnosed at around age sixty-five, are disturbances of one or more functions in language, motor skills, recognition, and identification of objects, and disturbances of executive functions such as planning, organizing, sequencing, or abstracting. You may notice changes in the personality of your loved one, perhaps loss of spontaneity, mood swings, anxiety, lack of initiative, or aggressive behavior.

The workings of the brain are marvelous and complicated. However, quite simply put, in the brain of the Alzheimer’s patient, there is a progressive degeneration and loss of vast numbers of nerve cells in those portions of the brain’s cortex that are associated with functions such as memory, learning, and judgment. The severity and nature of the patient’s dementia at any given time are proportional to the number and location of cells that have been affected.

Because age-related memory problems at first glance are not dearly black and white and are fairly common in both older adults and in Alzheimer’s patients, it’s difficult to conclude when and if a diagnosis is warranted.

So what drives you to seek a diagnosis of your loved one? Sometimes the recognition of problem forgetfulness becomes very apparent at one moment in time, as it did to Hugh regarding his wife, Ellen.

Hugh

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Although I recognized that my own memory was periodically unreliable, I noticed that Ellen was consistently forgetful, and I was getting a little worried about that. Then one afternoon when we were at the local shopping mall, I went in one direction and my bride went in the other, which is what we often did. We planned to meet at a particular restaurant at noon. Ellen showed up at the right time but with a single shoe under her arm. We both laughed that Ellen had absentmindedly taken the shoe from a store. I asked her, Which store? She had absolutely no idea, even after we had walked past every darn store in the shopping center, floor by floor, visiting every shoe store and department store in an attempt to return it. Don’t even ask me what we finally did with the shoe.

Although at the time it seemed humorous, it was this glaring incident that exceeded the boundaries of ordinary forgetfulness and compelled Hugh to seek a diagnosis for Ellen.

Yvette

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Yvette’s experience with her husband, Richard, is a very different example ending with the same conclusion, the need for a definitive diagnosis. Richard’s conduct was at times inappropriate and even appalling to Yvette. Sometimes he’d wear layers of clothing that were much too warm for temperate weather. However, it wasn’t until his behavior began to spill out into the community, and it was glaringly obvious that Richard had lost his sense of societal boundaries, that Yvette sought a diagnosis.

Richard began to wander out of the yard and take it upon himself to deliver the neighbors’ mail or newspapers to them. He would take the mail out of their mailboxes and either knock on their front doors and hand it to them or would walk into their houses if the door was unlocked. At first, I didn’t know that he was creating such havoc with the neighbors, until one very disgruntled neighbor called and complained to me about Richard. I was horrified, and apologized profusely. It seemed that no matter how many times I would remind him to refrain from handling the neighbors’ mail, he would invariably forget and continue this inappropriate behavior. I began to feel that I was policing my husband and had to be constantly vigilant. I bitterly resented this role. I was angry with the neighbors for their lack of compassion and with Richard for being out of control. I had attempted to explain that Richard was having memory problems, hoping they would be more empathic and patient with him, but what I really needed to do at that time was to realize myself that this was a real problem.

Sylvia

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Phil’s decline was, at first, more apparent with his job at an electronics manufacturer than it was at home. His supervisor called me and really caught me off guard. He explained that Phil’s performance at work was slow and inefficient and his judgment and reasoning ability seemed increasingly impaired. Although this call was alarming, I began to make sense of Phil’s avoidant behavior. He had begun to make excuses to stay home over the last month, and to avoid going to work. I had accepted this as he had seemed tired, and hence thought nothing of it.

At about the same time, I began to suspect that something was amiss when we received a couple of returned, inappropriately written checks and overdue notices. When I questioned Phil, he was quick to reassure me that he had everything under control. I always trusted him to pay the bills and chose to ignore the signs. However, after a few months, the errors increased and I decided to investigate. I was horrified when I discovered the chaotic state of our financial affairs.

This realization was difficult and complicated for Sylvia. Not only did she need to question and confront Phil about a task at which he had always been competent, but she also needed to come to terms with the painful reality that there was something wrong